Which questions to ask

You have the right to know as much as you wish about your condition and prognosis, and you have the right to understand the overall management strategy, including what treatment options will be available to you initially as well as subsequent options if initial treatments are not successful in stabilizing your disease.

Before the appointment, write down questions that you want to ask. If you do not understand the answers or explanations, don’t be afraid to ask them to be repeated or rephrased. It may be a good idea to go to the appointment with a loved one or friend, so that you can understand the explanations together and they can provide emotional support. The following are some of the questions you may want to ask:

General questions

• What type of NET do I have?

• Where is the tumor located? Has it spread to other parts of the body? Is it likely that it will spread?

• Is my NET likely to be caused by genetic factors? Are any other members of my family at risk of developing a NET?

• Are you a NET specialist? How many NET patients do you treat a year?

• Which specialists will be involved in my case?

• Are you involved with or have access to a multidisciplinary NET team? Could you recommend a specialized center for NETs in this area?

Tests/staging

• Did an experienced NET pathologist review the histology of my tumor?

• What tests need to be performed?

• What is the grade and staging of my NET? What does this mean?

• Based on my tumor grade and staging, what is my prognosis?

Management/treatment

• Which treatments, or combination of treatments, do you recommend? Why?

• What is the expected timeline for my management plan? Do I need to start with treatment right away?

• What will be done during the treatment, and what are potential side effects?

• How often do I need this treatment?

• Will I be hospitalized, or can I take this treatment at home?

• What should I avoid while having this treatment? And post treatment?

• Will I be able to work, exercise, and do my usual activities?

• Does this treatment treat my symptoms of NET?

Clinical trials

• Are there any relevant, ongoing clinical trials for my NET?

• What are the benefits and risks of participating in the mentioned clinical trial?

• How will I be monitored while participating in the clinical trial?

• What are my responsibilities during the clinical trial?

Support

• What assistance is available to me? To my family?

• Do I have access to psychological support?

• Whom should I call with questions or concerns outside regular office hours?

• Do you know of any support groups or resources for NET patients?